Living with epilepsy - Introduce yourself & meet others

Welcome to the Epilepsy group on Mayo Clinic Connect.
Having seizures, or being told you have epilepsy, affects people in different ways. Let’s learn from each other and share stories about living well with epilepsy, coping with the bumps and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. You’re likely to also meet fellow member and volunteer patient Mentor, Dawn (@dawn_giacabazi), when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one. Grab a cup of tea, or beverage of you choice, and let’s chat. Why not start by introducing yourself?

@michele0161

Thank you Bonnie and valm. We are in Syracuse and heading to a Dr. at Crouse Med center next week. I'm hoping he has a plan or at least more information. I am not opposed to going to Rochester. I believe there is a Mayo Clinic there. My son is the type of guy that needs to know all the science behind his health issues. He likes action and is not satisfied with vague answers. He can get agitated with "experts" and caregivers that he feels are just trying to "manage" him. This is his problem with the VA. They just want to attribute all issues to PTSD and up his disability and be done with it.
I know his anxiety and sleep problems play a significant role in the frequency of these seizures and I would like to see that addressed. The Keppra is causing increased depression and mood swings that he has to work so hard to control. It is exhausting for him.
I'll let you know how it goes and whether we will be going to Rochester for more help. Thank you valm, I will be asking about Vimpat..

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If you go to Rochester, MN, I’ve heard that they absolutely figure things out… where in your brain your seizure is starting, what meds would work, etc. I’ve also heard that they are better there than any of there other clinics..

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@michele0161

Thank you Bonnie and valm. We are in Syracuse and heading to a Dr. at Crouse Med center next week. I'm hoping he has a plan or at least more information. I am not opposed to going to Rochester. I believe there is a Mayo Clinic there. My son is the type of guy that needs to know all the science behind his health issues. He likes action and is not satisfied with vague answers. He can get agitated with "experts" and caregivers that he feels are just trying to "manage" him. This is his problem with the VA. They just want to attribute all issues to PTSD and up his disability and be done with it.
I know his anxiety and sleep problems play a significant role in the frequency of these seizures and I would like to see that addressed. The Keppra is causing increased depression and mood swings that he has to work so hard to control. It is exhausting for him.
I'll let you know how it goes and whether we will be going to Rochester for more help. Thank you valm, I will be asking about Vimpat..

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Absolutely there is a Mayo Clinic in Rochester, MN that is. The very original started in Rochester, MN. I've never been to the one in FL or AZ but have been to Rochester. The very best in dealing with seizure disorders.

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Hi! My name is Pam and I am the mother of a 40-year-oid son with uncontrolled seizures. They started without warning when he turned 3 (he was "normal" until then) and have continued for the last 37 years. No cause has ever been discovered. He lives at home and has slowly become totally disabled (mentally and physically) as the years passed and the seizures continued. They are when he is asleep 99.9% of the time, so we are fortunate there (less chance of injury). We have tried many anti-seizure medications, many diets (including the very strict ketogenic diet), and many alternative treatments without lasting improvement. For the last 2 years we have been trying medical marijuana, with mixed results. I would love to hear any suggestions/ideas that have worked for others in his situation.
Thanks so much!

Liked by Leonard

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Hi . My name is Mary and my granddaughter Talia has been in the hospital for 33 days now in a medically induced coma. She had a seizure about 8 years ago and she was giving medicine for it. She didn't have any more for about 4 years then she would have one every couple of months. But on July 29th she had a seizure and was taken to the emergency room at the hospital in our city. The hospital flew her to a major hospital in Albuquerque New Mexico where they said they wanted to stop the seizures. They put her into a medically-induced coma. Yesterday the doctor said that they have tried almost all medicines they could think of. They have two more that they want to try and if those don't work they will try electroshock therapy. If that doesn't work they said they were out of options they can't allow her to wake up because they say if she has a seizure it will damage her brain. If electric shock therapy does not work there's nothing else they can do. Please if there's someone that has a suggestion for my son on what he can do for his daughter please please let us know thank you.

Liked by menville, Leonard

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@colleenyoung

Hi @dawn_giacabazi @blath2000 @ketomom @hermsenk @punkin312 @inkdfrog @matermiracle @sall @stayfree @FaceNu @debburrington @beccahp @19aleckelly @scoobylisa @palmetto @lucky12 @tatiana01 @jontan @sylviaanne @TabMar @kevinkelley

I’d like to invite you to the new group dedicated to discussions about epilepsy and seizures. It’s a space where we can ask questions, share tips and learn about living with epilepsy from each other. Whether you live with epilepsy or care for someone with epilepsy, please join us. Pull up a chair and tell us a bit about yourself.

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My granddaughter has been in a medically-induced coma for the past 33 days. The doctor said she was having a seizure every hour or so that lasted for a minute or two. They put her in a medically induced coma to try and stop the seizures and in the past 33 days they have tried quite a few different medications. Nothing has worked. They said there are two more medications they can try and if those don't work they will try electroshock therapy if that doesn't stop the seizures they said there is nothing more they can do. They can't allow her to wake up because they say if she has a seizure it could damage her brain. There's nothing left to try. Please if someone has a suggestion for my son to help his little girl please please let me know. Thank you

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@mmaryemc

Hi . My name is Mary and my granddaughter Talia has been in the hospital for 33 days now in a medically induced coma. She had a seizure about 8 years ago and she was giving medicine for it. She didn't have any more for about 4 years then she would have one every couple of months. But on July 29th she had a seizure and was taken to the emergency room at the hospital in our city. The hospital flew her to a major hospital in Albuquerque New Mexico where they said they wanted to stop the seizures. They put her into a medically-induced coma. Yesterday the doctor said that they have tried almost all medicines they could think of. They have two more that they want to try and if those don't work they will try electroshock therapy. If that doesn't work they said they were out of options they can't allow her to wake up because they say if she has a seizure it will damage her brain. If electric shock therapy does not work there's nothing else they can do. Please if there's someone that has a suggestion for my son on what he can do for his daughter please please let us know thank you.

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Is it too late for the Albuquerque doctors to communicate with the seizure doctors at Rochester Mayo Clinic? I know they may not work for the same boss, but I would check if any of the Albuquerque seizure doctors were from that Rochester Mayo Clinic and if whether Rochester and the Albuquerque Doctors maintain communication about seizure treatments, in any way. I just hear alot of good things about the Rochester Mayo Clinic on this feed for seizure treatments and it is probably already old news to you. Will be praying for Talia! I have a younger brother, Matt, of 28 years that has had about 10 Grand Mal seizures this year and the doctors had to switch him to Vimpat. He has had 2 more since the switch, so less now than before.

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@mmaryemc

My granddaughter has been in a medically-induced coma for the past 33 days. The doctor said she was having a seizure every hour or so that lasted for a minute or two. They put her in a medically induced coma to try and stop the seizures and in the past 33 days they have tried quite a few different medications. Nothing has worked. They said there are two more medications they can try and if those don't work they will try electroshock therapy if that doesn't stop the seizures they said there is nothing more they can do. They can't allow her to wake up because they say if she has a seizure it could damage her brain. There's nothing left to try. Please if someone has a suggestion for my son to help his little girl please please let me know. Thank you

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Come to Mayo in Rochester, MN. Best epilepsy center in the world.

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@mmaryemc

Hi . My name is Mary and my granddaughter Talia has been in the hospital for 33 days now in a medically induced coma. She had a seizure about 8 years ago and she was giving medicine for it. She didn't have any more for about 4 years then she would have one every couple of months. But on July 29th she had a seizure and was taken to the emergency room at the hospital in our city. The hospital flew her to a major hospital in Albuquerque New Mexico where they said they wanted to stop the seizures. They put her into a medically-induced coma. Yesterday the doctor said that they have tried almost all medicines they could think of. They have two more that they want to try and if those don't work they will try electroshock therapy. If that doesn't work they said they were out of options they can't allow her to wake up because they say if she has a seizure it will damage her brain. If electric shock therapy does not work there's nothing else they can do. Please if there's someone that has a suggestion for my son on what he can do for his daughter please please let us know thank you.

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Hello @mmaryemc,

I'm so very sorry to learn about your granddaughter. I'd like to bring @dawn_giacabazi @sall @kerivb @12271997 @jakedduck1 @patrassi into this discussion. While your granddaughter's situation may be considerable different, I thought you'd like to meet other members who've faced some difficult decisions.

I'd sincerely encourage you to visit this webpage where you can view all the details about Mayo Clinic epilepsy care teams; The National Association of Epilepsy Centers rates all Mayo Clinic campuses as Level 4 epilepsy centers, providing the highest level of diagnosis and treatment options for people with epilepsy.
https://www.mayoclinic.org/diseases-conditions/epilepsy/care-at-mayo-clinic/mac-20350102

@mmaryemc, I realize how utterly terrifying this must be and that you're doing all that you can. We're here to help; please keep talking and sending any updates or any questions that the Connect community can help answer.

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@mmaryemc

Hi . My name is Mary and my granddaughter Talia has been in the hospital for 33 days now in a medically induced coma. She had a seizure about 8 years ago and she was giving medicine for it. She didn't have any more for about 4 years then she would have one every couple of months. But on July 29th she had a seizure and was taken to the emergency room at the hospital in our city. The hospital flew her to a major hospital in Albuquerque New Mexico where they said they wanted to stop the seizures. They put her into a medically-induced coma. Yesterday the doctor said that they have tried almost all medicines they could think of. They have two more that they want to try and if those don't work they will try electroshock therapy. If that doesn't work they said they were out of options they can't allow her to wake up because they say if she has a seizure it will damage her brain. If electric shock therapy does not work there's nothing else they can do. Please if there's someone that has a suggestion for my son on what he can do for his daughter please please let us know thank you.

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For one, is her Dr. a epilepsy specialist? If not you need one, 2ndly I’ve never heard of them putting anyone in a medical induced coma to stop seizures, there are lots of websites such as Epilepsy foundation, that may have answers or suggestions for you. Also how long did they try each med? Reason I ask is Some meds take weeks/months to get to the right level to stop them. I hope things turn out for your granddaughter.

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@mmaryemc

Hi . My name is Mary and my granddaughter Talia has been in the hospital for 33 days now in a medically induced coma. She had a seizure about 8 years ago and she was giving medicine for it. She didn't have any more for about 4 years then she would have one every couple of months. But on July 29th she had a seizure and was taken to the emergency room at the hospital in our city. The hospital flew her to a major hospital in Albuquerque New Mexico where they said they wanted to stop the seizures. They put her into a medically-induced coma. Yesterday the doctor said that they have tried almost all medicines they could think of. They have two more that they want to try and if those don't work they will try electroshock therapy. If that doesn't work they said they were out of options they can't allow her to wake up because they say if she has a seizure it will damage her brain. If electric shock therapy does not work there's nothing else they can do. Please if there's someone that has a suggestion for my son on what he can do for his daughter please please let us know thank you.

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Mary , I am so sorry to hear about your granddaughter. I have heard that Mayo Clinic has some online appointments , Mayo doctors may talk to your doctors to give some instructions or help. Call Mayo office tomorrow morning to see it could happen. I wish you and your family much love and hope.

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@mmaryemc

Hi . My name is Mary and my granddaughter Talia has been in the hospital for 33 days now in a medically induced coma. She had a seizure about 8 years ago and she was giving medicine for it. She didn't have any more for about 4 years then she would have one every couple of months. But on July 29th she had a seizure and was taken to the emergency room at the hospital in our city. The hospital flew her to a major hospital in Albuquerque New Mexico where they said they wanted to stop the seizures. They put her into a medically-induced coma. Yesterday the doctor said that they have tried almost all medicines they could think of. They have two more that they want to try and if those don't work they will try electroshock therapy. If that doesn't work they said they were out of options they can't allow her to wake up because they say if she has a seizure it will damage her brain. If electric shock therapy does not work there's nothing else they can do. Please if there's someone that has a suggestion for my son on what he can do for his daughter please please let us know thank you.

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Mary , I really hope this could help your family, call the appointment office 507 2849974 to ask for a video appointment. Maybe they could give you some ideas for her treatment.

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@pamelastewart5

Hi! My name is Pam and I am the mother of a 40-year-oid son with uncontrolled seizures. They started without warning when he turned 3 (he was "normal" until then) and have continued for the last 37 years. No cause has ever been discovered. He lives at home and has slowly become totally disabled (mentally and physically) as the years passed and the seizures continued. They are when he is asleep 99.9% of the time, so we are fortunate there (less chance of injury). We have tried many anti-seizure medications, many diets (including the very strict ketogenic diet), and many alternative treatments without lasting improvement. For the last 2 years we have been trying medical marijuana, with mixed results. I would love to hear any suggestions/ideas that have worked for others in his situation.
Thanks so much!

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Hi @pamelastewart5, welcome to Connect.
There are several members who have adult children living with epilepsy, like @sarahlou @twiceinalifetime @michele0161. And I know @jakedduck1 and @dawn_giacabazi will join me in welcoming you to the forum.

You can read more about Sarah's story here:
– Second surgery for my 28 year old son. Advice needed please https://connect.mayoclinic.org/discussion/second-surgery-for-my-28-year-old-son-advice-needed-please/

You may also wish to share about your experiences with medical marijuana here:
– Medical Cannabis as a treatment for Seizures https://connect.mayoclinic.org/discussion/medical-cannabis-as-a-treatment-for-seizures/

I think you might appreciate connecting with IHateDiabetes. She cares for her adult son, who is disabled, and shares with others in the Caregivers group, for example here:
– Too much paperwork. Its overwhelming. https://connect.mayoclinic.org/discussion/too-much-paperwork-its-overwhelming/

Pamela, what supports do you have to help with the care of your son and his and your mental wellbeing?

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hi, I was diagnosed Juvenile myoclonic epilepsy 20 years back. On sodium valproate and clonazepam. Now I have sleep myoclonus. and a great deal of self-induced stress.

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@arunhari

hi, I was diagnosed Juvenile myoclonic epilepsy 20 years back. On sodium valproate and clonazepam. Now I have sleep myoclonus. and a great deal of self-induced stress.

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Hello, @arunhari, and welcome to Mayo Clinic Connect. Sounds like you've managed the myoclonic epilepsy for a long time. Sorry to hear you now have sleep myoclonus, and a great deal of stress.

You may be interested in this Mayo Clinic information specifically about myoclonus: https://www.mayoclinic.org/diseases-conditions/myoclonus/symptoms-causes/syc-20350459

I'm hoping some of the members in this discussion can tell you a bit about how they have managed their (or a loved one's) epilepsy and whether they have experienced sleep myoclonus, like @dawn_giacabazi @jakedduck1 @bonnieh218 @valm. @patrassi may also have some insights.

How has the sleep myoclonus affected your sleep quality, @arunhari?

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@lisalucier

Hello, @arunhari, and welcome to Mayo Clinic Connect. Sounds like you've managed the myoclonic epilepsy for a long time. Sorry to hear you now have sleep myoclonus, and a great deal of stress.

You may be interested in this Mayo Clinic information specifically about myoclonus: https://www.mayoclinic.org/diseases-conditions/myoclonus/symptoms-causes/syc-20350459

I'm hoping some of the members in this discussion can tell you a bit about how they have managed their (or a loved one's) epilepsy and whether they have experienced sleep myoclonus, like @dawn_giacabazi @jakedduck1 @bonnieh218 @valm. @patrassi may also have some insights.

How has the sleep myoclonus affected your sleep quality, @arunhari?

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Hi @arunhari . I began with facial brachial dystonic seizures/epilepsy and had facial and arm jerks on my left side. 10 days in the hospital and they got the seizures to stop with IVIG therapy and Keppra at 500 mg twice a day and was weaned off of the Keppra in Feb/Mar. THen the jerking came back so I had another 5 day IVIG infusion. That lasted about 3 weeks. Then I had my first RItuxan infusion in March. In April I had grand mal seizure and was put back on Keppra. Then had more grand mal and absense seizures so up’d the Keppra to 1000mg twice a day. Almost 2 months seizure free and had 2 more grand mals one day after the other, so they upped my Keppra to 1500 mg twice a day. And then added in Vimpat. Just passed the 100 day mark with no seizures.
I have not had the type of seizure that only comes when you are sleeping.

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